A Chemo for Dummies Guide…sort of
On December 11th, 12th, heck it all blurs together…sometime before Xmas, Art had a PET and CT Scan. The scans showed the cancer had shrunk considerably, verified by he rosy cheeks and increased energy level. But there was this cold. A nagging little bugger that just wouldn't life. On December 18th, Art started a different round of chemo that included nice sounding drugs such as Methatrexate and Ara C, two chemo drugs that are known to penetrate the brain as well as the body. The drugs’ job was to eliminate any lurking cells in the brain, the hardest part of the body to treat. He went into the round under the weather with a slight cough. He came out of the round worse for wear. We spent 7 extra days at the center were he recieved four transfusions, mego doses of antibiotics and pain meds.
On January 10th and 11th, Art was given another set of tests that again, included a PET Scan and CT Scan. The tests were to be used to convince the insurance company that Art was an excellent candidate for a stem cell transplant. Yesterday, at 2:30, we got a call from one of Dr. Wolin’s nurses. And well, we all know when a doctor says he wants to see you today it’s usually not to congratulate you on some health milestone.
At 5:30 we got the crushing news that not only had none of the cancer cells reduced in size, but several had grown. Dope slap to the head. That would explain his night sweats and the nagging cough he’s been experiencing for just under 3 weeks, symptoms from the beginning.
So that leaves us here, Wednesday night. My mother-in-law has agreed to stay with the kids. My mom is on call, willing to fly out when we need her. I am thankful we will not need a nanny. (Thank you to all who have offered your nannies, your homes and yourselves!) I am trying to think of what to pack. Pjs, toothbrushes and Art’s voluminous drug supply are obvious no brainers. I know there is much more to think of, remember, discard, regard and contemplate but in all these months I have learned one thing: I can buy whatever it is we need. I just need to keep myself close to Art.
Starting tomorrow, Art will get two major chemo drugs, Etopocide and Cytoxin. The dosage amounts will be the equivalent of 5 rounds. 5 rounds in 5 days, sounds like some reality tv show. There will be other drugs, of course, to counteract the chemo drugs. Some I will give to him, some the cancer center will administer. At 8:00 pm, we will head to our hospital-sponsored apartment about 15 minute from the hospital via dr.’s orders. We will live in that apartment, traveling to and from the hospital for 10 days, up to possibly 6 weeks. Now you may be saying, isn’t it better if Art is at home? And the answer is yes; however, when you are a chemo patient who lives in Venice and you are receiving high dose chemo that will drop your white blood cell count down to almost zero and you start to run a fever and you call the ambulance because something is wrong and the ambulance takes you to St. Johns, a hospital that has no record of your treatment and well, you get the idea. Same scenario but in the apartment, the ambulance will take us to Cedars-Sinai where his 4” thick file can be quickly located as well as the doctors who know him. That is the reason for the apartment.
If all goes well, this round will shrink the tumors, Art will have another PET Scan at 6:15 a.m. on January 29th. With luck and prayers, drugs and doctor’s wisdom, the tumors will again be shrinking and that afternoon, Art will be able to start the process of collecting his own stem cells for his stem cell transplant. Our hope is that on Feb. 12, Art will begin receiving his last round of high dose chemo (we'll be professionals by then), to be followed by his stem cell transplant (paid for by the insurance company, fingers crossed) on February 20th.
That leaves us with a simple plan -- to laugh often and hard and to surround ourselves with love. Funny movie recommendation and good jokes (dirty ones acceptable) will be honored. Emails and cards read and held onto. We will get past, through, over and around this no matter what the next day holds ‘cause ya know? It’s just a day.
Requested Update on The Kids
They are well...kids. Acting out one minute, always wondering what’s going to happen to them and then next on to quarreling over who gets the blue blanket or play Darth Vader. Lately they have been requesting that I sing to them after I say good night. It’s something I used to do when they were younger. As a mother, looking for signs of anything I am tempted to read into that. I choose not to and enjoy the moment.
Langston is the most scared. He asks questions, “What is a stem cell? Why do the drugs make daddy so sick?” A month ago he stated “Mom, we didn’t like it when you left us at Lisa’s. We understand that you had to do it, but we didn’t like it.” When Art was hospitalized in August, the kids spent three days with our friends Lisa and Dennis. As he is a boy of 9, I was heartened by his ability to risk expressing his feelings and to understand the situation. Pallas states how much she hates it when daddy is sick ‘cause he can’t read to her. Ezra was the only one of the three who cried last night when we told them about the tumors. When asked what they miss the most when Daddy is sick, the response was “Oh, nothing. It’s nice ‘cause he doesn’t yell at us.” Followed by "Ya, he yells too much," is the back up chorus often heard. Then we all laugh.
They act out, stomp and storm and in the middle of the angst I back away remembering that sometimes it's their way of dealing. (Don't know where they got that from!) As long as the days remain relatively the same, they seem to cope well. (I wonder am I doing them a service or diservice? Nothing is permenant but impermance.) Either way, this disease has highlighted what many believe -- children come through us, and are not of us. Sometimes we can we step back and enjoy them (in their loudness, roughness, smellinesss) and wonder at the ways they have choosen to cope with this. For that I am grateful. Their ability to live in the moment is a lesson I hope to draw on more frequently.